{"id":413481,"date":"2024-09-18T23:00:00","date_gmt":"2024-09-18T23:00:00","guid":{"rendered":"https:\/\/www.saipantribune.com\/?p=413481"},"modified":"-0001-11-30T00:00:00","modified_gmt":"-0001-11-29T14:00:00","slug":"One-Woman-s-Path-to-Finding-Treatment-for-Narcolepsy","status":"publish","type":"post","link":"https:\/\/www.saipantribune.com\/index.php\/One-Woman-s-Path-to-Finding-Treatment-for-Narcolepsy\/","title":{"rendered":"One Woman’s Path to Finding Treatment for Narcolepsy"},"content":{"rendered":"

Wendy was compensated by Avadel Pharmaceuticals for her time. Individual results may vary.<\/em><\/p>\n

(Family Features) For Wendy, playfully jumping on the bed as a child led to panic when, suddenly, her limbs ceased to function and she dropped to the floor. Although she needed help, she couldn\u2019t use her voice. This was Wendy\u2019s first experience with cataplexy, a sudden period of muscle weakness\u00a0that can be triggered by strong emotions, like laughter, excitement, or anger \u2013 a hallmark symptom of narcolepsy type 1.<\/p>\n

Narcolepsy is a complex, lifelong sleep disorder that includes symptoms like cataplexy and excessive daytime sleepiness and is estimated to affect 1 in 2,000 Americans.<\/p>\n

Wendy\u2019s childhood experience with cataplexy was followed by years of struggling with excessive daytime sleepiness (EDS) and trouble sleeping through the night. Her sleepiness, however, was dismissed for much of her life \u2013 often being told she was tired simply due to being busy.<\/p>\n

\u201cNo one believed me when I said that something felt wrong,\u201d Wendy said.<\/p>\n

For people with narcolepsy, the lines between being asleep and awake are blurred. Instead of a natural sleep pattern, they often experience short periods of poor-quality sleep throughout the day and night, rather than restorative, consolidated sleep.<\/p>\n

25 years after her first cataplexy attack, Wendy experienced a second episode while driving and was rushed to the emergency room.<\/p>\n

\u201cI stayed in the hospital for a week,\u201d said Wendy. \u201cDoctors first thought I likely had an attack similar to a stroke or a severe migraine. It wasn\u2019t until I met with a neurologist and shared that I slept too much that I was referred for a sleep study and finally diagnosed with narcolepsy.\u201d<\/p>\n

After receiving the right diagnosis, the next challenge for Wendy was finding the right treatment.<\/p>\n

Her doctors first prescribed several stimulants, which didn\u2019t alleviate her daytime sleepiness. She was then prescribed a sodium oxybate, a treatment used for EDS and cataplexy, however this particular medication required waking up in the middle of the night to take a second dose, which Wendy found herself struggling to do.<\/p>\n

Wendy turned to the narcolepsy community, where she learned about a once-nightly medication, LUMRYZ\u00ae (sodium oxybate) for extended-release oral suspension, CIII.<\/p>\n

LUMRYZ is the first and only U.S. Food and Drug Administration approved once-at-bedtime sodium oxybate treatment for cataplexy or EDS in adults with narcolepsy, and a medication that Wendy says she is grateful for.<\/p>\n

LUMRYZ has a boxed warning as a central nervous system depressant and for its potential for abuse and misuse. LUMRYZ is available only through a restricted program under a Risk Evaluation and Mitigation Strategy called the LUMRYZ REMS. Most common adverse reactions (incidence \u2265 5% and greater than placebo) reported for all doses of LUMRYZ combined were nausea, dizziness, bedwetting, headache and vomiting. Please see additional Important Safety Information, including Boxed Warning below.<\/p>\n

\u201cWhen I first heard about LUMRYZ being once-at-bedtime, I was ecstatic there was an option that might help with my cataplexy and EDS without having to wake in the middle of the night for a second dose,\u201d said Wendy.<\/p>\n

Today, Wendy has discovered a treatment that is right for her and helps improve her EDS and cataplexy symptoms, individual results may vary.<\/p>\n

\u201cMy advice to others with narcolepsy is to be outspoken about your experience and learn as much as you can to be well-informed. I want to see people be diagnosed earlier, advocate for themselves, and find a treatment that\u2019s right for them.\u201d<\/p>\n

If you are struggling with excessive daytime sleepiness, ask your healthcare provider about narcolepsy, and if you have been diagnosed, ask your physician if LUMRYZ is right for you. Learn more at www.lumryz.com<\/a>.<\/p>\n

Photo caption: Wendy, a person with narcolepsy<\/p>\n

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INDICATIONS<\/strong><\/p>\n

LUMRYZ (sodium oxybate) for extended-release oral suspension is a prescription medicine used to treat the following symptoms in adults with narcolepsy:<\/p>\n